Johns Hopkins University, Baltimore, Maryland, USA.
Epilepsia. 2010 Jul;51(7):1277-82. doi: 10.1111/j.1528-1167.2009.02488.x. Epub 2010 Feb 1.
The ketogenic diet has well-established short- and long-term outcomes for children with intractable epilepsy, but only for those actively receiving it. However, no information exists about its long-term effects years after it has been discontinued.
Living subjects were identified who were treated at the Johns Hopkins Hospital with the ketogenic diet from November 1993 to December 2008 for >or=1 month, and had discontinued it >or=6 months prior to this study. Of 530 patients who were eligible, 254 were successfully contacted by phone or e-mail with a survey and request for laboratory studies.
Questionnaires were completed by 101 patients, with a median current age of 13 years (range 2-26 years). Median time since discontinuing the ketogenic diet was 6 years (range 0.8-14 years). Few (8%) still preferred to eat high fat foods. In comparison to the 52% responder rate (>50% seizure reduction) at ketogenic diet discontinuation, 79% were now similarly improved (p = 0.0001). Ninety-six percent would recommend the ketogenic diet to others, yet only 54% would have started it before trying anticonvulsants. Lipids were normal (mean total cholesterol 158 mg/dl), despite most being abnormal while on the ketogenic diet. The mean Z scores for those younger than age 18 years were -1.28 for height and -0.79 for weight. In those 18 years of age or older, the mean body mass index (BMI) was 22.2.
This is the first study to report on the long-term effects of the ketogenic diet after discontinuation. The majority of subjects are currently doing well with regard to health and seizure control.
生酮饮食对耐药性癫痫儿童具有明确的短期和长期疗效，但仅对正在接受治疗的患者有效。然而，对于停止生酮饮食多年后的长期影响，目前尚无相关信息。
本研究纳入了 1993 年 11 月至 2008 年 12 月期间在约翰霍普金斯医院接受生酮饮食治疗且治疗时间大于 1 个月、停止生酮饮食治疗时间大于 6 个月的患者。在符合条件的 530 例患者中，通过电话或电子邮件成功联系到 254 例患者，并对他们进行了问卷调查和实验室检查。
101 例患者完成了问卷，目前的中位年龄为 13 岁（范围为 2-26 岁）。停止生酮饮食的中位时间为 6 年（范围为 0.8-14 年）。很少（8%）患者仍然喜欢吃高脂肪食物。与停止生酮饮食时 52%（癫痫发作减少 50%以上）的应答率相比，目前 79%的患者病情同样得到改善（p=0.0001）。96%的患者会向他人推荐生酮饮食，但只有 54%的患者会在尝试抗癫痫药物之前选择该治疗方法。尽管大多数患者在接受生酮饮食治疗时血脂异常，但停止生酮饮食后血脂均恢复正常（平均总胆固醇为 158mg/dl）。年龄小于 18 岁的患者身高 z 评分平均为-1.28，体重 z 评分平均为-0.79。18 岁及以上的患者平均 BMI 为 22.2。
这是第一项关于停止生酮饮食后长期疗效的研究。大多数患者目前的健康状况和癫痫控制情况良好。
